My Diagnosis Story of Crohn’s Disease & POTS

When I was diagnosed at nineteen with Crohn’s Disease; almost eight years ago, I had no idea how much it would change my life. Before, I was a high energized person constantly on the go, never taking the time to fully appreciate life. Afterward; I had to learn to slow down, pay attention to what my body was trying to tell me.

Me In College Slowly Getting More Sick From Crohn's Disease

As I got properly medicated and regained my strength, I went right back to the way I was. I was working full time, working out every day, not knowing I was fighting a battle I would soon lose. I’d have to leave my job because of being so over run, but the second my health would approve, I’d start right back where I had left off.

I moved to Oshawa to go to college full time. I was having a blast. Classes all day, then two hours at the gym, and off to hang out with all of my friends in the residence. By the time the year was coming to a close I was so sick and in so much pain that I couldn’t sleep at night, so I’d try to nap when I could on my break in between classes.

I wasn’t well enough to go through my second year to get my diploma. I was having what I thought was a full blown relapse. I moved home and immediately went back onto my medication and started working with my G.I. team find out why I kept getting sick. I started working again as well, but only part time.

Almost a year later, the G.I.’s came to find I had nerve damage in my intestines, which was what was giving me all the signs of a relapse. I was started on a new medication and went back to work. Unfortunately, something was still amiss.

Slowly I got worse and worse. I was so bad I couldn’t even stand long enough to cook myself a meal. Thankfully, a heart murmur I had grown up with was noticed by one of my G.I. doctors. Even though it never affected me, they just wanted me to get a check up and a referral was sent to the cardiology team.

Over a year later after the Cardiologist noticed I had a supremely high heart rate, the team did a Tilt Table Test, to find that because of the nerve damage from having Crohn’s Disease, I would now be stricken with nerve damage all throughout my autonomic nervous system, diagnosed as POTS (Postural Orthostatic Tachycardia Syndrome). A rare, but truly debilitating disease like Crohn’s, with no known cure, but different in the sense it is very hard to control.

I now wake up every morning from having slept on a bed wedge to help with my heart rate and when I am forced to stand. I lay there awake until my body stops shaking so badly it is no longer rocking the bed. I get up, grab a glass of water, and relax on the couch for the next couple of hours until I am well enough to get myself something to eat. Any meals I make are prepared on my kitchen floor with a cutting board. On a good day, I can bathe and wash my hair. On a bad day, I can’t get out of bed at all without passing out, crawling to get to the bathroom.

I am still going strong though! I have a Crohn’s Disease support group online, and a blog that gives advice, recipes, work out tips, and videos to help others who suffer like I do. I also do video blogs on You Tube, sharing my story and answering any questions I can, and what life style changes have helped for me.

I am also taking the Social Service Worker program at Loyalist College from home. The professors have been amazing about letting me work at my own pace, since they know it’s the career I would love to be a part of. To let people know that despite it all, life is beautiful and most definitely worth fighting for.

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8 thoughts on “My Diagnosis Story of Crohn’s Disease & POTS”

What were your initial symptoms for POTS, at the end of last month I spent a week in the cardiac unit in anchorage after they attempted to convert my heart both medicinally and electrically after finding that I was in Super Ventricular Tachycardia, running a heart beat well over 200. They ended up having to to an Electrical Pulmonary Study and ablation to stop it, but I’m still having runs of 120 -140 bpm, along with a numb spot on my leg and an occasional nerve pinch in my arm. So I’m looking at what could be causing all this, and while my medical knowledge is woefully inadiquite for a cronnie of 4 years, POTS seems like it could fit.

My initial symptoms only showed when I stood still. My heart would race, and I’d start to feel like I was going to throw up or faint. Really sweaty, and then I’d be fine once I started moving again. Eventually it progressed to being symptomatic no matter what I was doing. But the Cardiologists call it POTS if your heart rate increases 20-30 beats in about 5 minutes after standing, but with most people who have it, it surpasses that in quicker time. Your heart rate is pretty high naturally like mine is without Beta Blockers, but it took yrs to find the right one, and then another yr to get the right dosage into me.

I’m another Crohn’s and POTS patient. From what I can tell, my POTS is caused by low blood volume, not nerve damage. The low blood volume is a result of my Crohn’s, tho – my serum albumin and total blood protein level is low, which causes low “oncotic pressure”, and thereby limits the amount of fluid in my blood.

For what it’s worth, my solution is to keep myself super hydrated. I drink about 2 gallons of water a day to stay stable. I’m also on midodrine, but the water is key. I have no idea if anyone else has any similar experiences, as I’ve had to piece this all together myself. (A Pd.D. in chemistry has helped a lot here.). Drinking pissing is inconvenient, but nothing compared with POTS.

I’ve also been diagnosed with Crohn’s and POTS. I’m kinda in the same boat with you where I’m in college but I can’t attend several of my classes unless I’m in a chair but sadly, it’s hard to do that in labs for Pastry Art management. I’m also at a loss due to no income at this time. I tried several different jobs within the past few months and I can’t physically do them. I’ve heard a lot of tips but for some reason I’m in a lot of pain now from the Crohn’s and can’t stand for over 20 minutes without passing out, which is a problem for what I’m majoring in. Luckily my boyfriend and his mother (I’m temporarily living with them) are very understanding and supportive but I guess the best way is, I’m stuck. Haha

You are exactly unfortunately! You want to do something career wise that you are passionate about… yet you also have to consider POTS and standing, and what would be easiest for when Crohn’s is being a pain… that narrows it down to almost nothing! Plus both illnesses, but especially POTS makes it hard to concentrate and remember things you need to do, etc. making it worse. Plus there is the grieving that comes with being chronically ill… Thankfully you have people who you can rely on! I am now on disability. I went on it for depression, but it’s been a huge help with the physical illnesses as well.

Yeah my family has been suggesting disability but I’ve grown up around some people who frown highly on not working to get income. This is something I’ve been debating about since I need the money and I’ve tried working but I can’t do it. I’m glad to hear it’s been helping though! Sorry to hear about the depression but I’m super grateful I’m not the only one having these issues now. Thank you! 🙂